Swelling where the shoulder meets the neck

[AnneEvo]

I've had this swelling for over a week. I know people have had swellings in their neck related to their thyroid gland but as mine is just where the shoulder meets the neck I'm not sure if that is thyroid related. Is it likely to be? If so what's the likely cause. It's not exactly painful but I can feel it very slightly.

[SlowDragon Administrator]

You can get a sub-sternal goitre

ghorayeb.com/thyroidsubster...

Looking at previous posts, you were hoping to get dose increase from 50mcg Levothyroxine a while back

Did that happen. Have you had bloods retested since?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

[AnneEvo in reply to SlowDragon]

Thank you.

I haven't made an appointment yet. I know I should, I think it's partly not looking forward to a possible battle as the last 2 times I've been I've been told my levels are ok (I know that mwans nothing - plus not feeling ill so it's easy to put off). Also was waiting to see if vitamin D helped with the tiredness.

[SlowDragon Administrator in reply to AnneEvo]

How much vitamin D are you currently taking?

Strongly recommend you get full testing of vitamins and thyroid privately and then come back with new post once you get results and ranges

Members can advise on next steps and what to ask GP for

[AnneEvo in reply to SlowDragon]

Thank you for that. Another reason I didn't want to ask for increase in levo just yet is because I feel tired but just a sudden tiredness either in the afternoon or evening; I'm not tired all the time so wanted to try to find if there was another reason for that.

Currently on 25,000iu vitamin D once a week - on prescription, 3 months supply. I understand I will need to take a maintenance dose when that's finished. My vitamin D had gone up to 90 from 18.4nmol/L last time I had any bloods done.

I will get full testing again. Last tests for thyroid were in February with Medichecks.

TSH 1.57 (0.27 - 4.2) I know TSH generally should be lower but I feel fine apart from the bouts of tiredness.

Free T3 4.21 (3.1 - 6.8)

Free thyroxoine 16 (12 - 22)

B12 156.000 (37.5 - 188)

Ferritin was 99.7ug/L range (13-150)

Folate >19.8 ug/L (>3.89)

[SlowDragon Administrator in reply to AnneEvo]

Improving extremely low vitamin D may have improved conversion of FT4 to FT3

In this Feb test FT3 was pretty low

Might be better to wait until finished loading dose of vitamin D to retest everything

[AnneEvo in reply to SlowDragon]

Thank you once again. I still don't know enough to tell about FT3 but I did think it was a little low. I think I'll forget the increase in levo for the time being but I'll ask the doctor about the bouts of tiredness and the swelling. I think myself if I just needed an increase in levo I would be tired all the time.

[AnneEvo in reply to SlowDragon]

Looking at the pictures for substernal goitre, my swelling is in a different place.

I have just booked an appointment at docs for Thursday - also put in reason online, mentioned the swelling and request for increase in levo. Not that I expect putting the reason in now to help that much!

[SlowDragon Administrator in reply to AnneEvo]

You may want GP to retest thyroid levels first now that vitamin D has been improved

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[AnneEvo in reply to SlowDragon]

I know you're busy with so many posts on here but I'd be grateful if you could comment on my most recent blood tests which I've put up now ( sorry no time to sort out why it's gone to italics, I know I've hit something on the keyboard)

Even if levels look ok, I'll still get the swelling checked out.

[McPammy]

Hi. I had swelling exactly at same point. Now I’ve been prescribed T3 medication with Levothyroxine that swelling has reduced. I don’t convert T4 to T3. I also got swelling on the inside of my knees. That hadn’t gone yet. I’ve been on T3 8 weeks now. So going to give it some more time. I do exercise by walking much more now that I can.

[AnneEvo in reply to McPammy]

Thanks. Hope the T3 helps with your knee.